Mental disorders that affect older people include anxiety disorders, mood disorders, bipolar disorders, schizophrenia and dementia. This topic focuses on mental illness or mental health disorders as distinct from the broader concept of mental health and wellbeing issues.
Even mild expressions of mental illness can have a significant impact on an older person’s health, function, quality of life, use of health services and outcomes of health interventions. [1,2] Older people who have a mental illness are also more likely to have significant social and physical health problems. [1,3] Evidence indicates that a significant proportion of patients receiving palliative care suffer from anxiety, depression, delirium, or other mental symptoms. [4-7]
This topic focuses on mental illness or mental health disorders as distinct from the broader concept of mental health and wellbeing issues.
The terms ‘mental disorder’, ‘mental illness’ and ‘mental health disorder’ are all used to describe a spectrum of mental health and behavioural disorders that can vary in duration and severity. In this evidence synthesis, the term ‘mental illness’ is used as it is the term most commonly used in the literature.
The Symptoms and Medicines section in palliAGED offers practice guidance for the symptom of anxiety in terminal care of older people. The information in the Clinical Evidence section of CareSearch on Anxiety and Depression may also be useful, although the information is not specific to older people.
In the literature there is often not a clear distinction between anxiety and depression as disorders or symptoms.
The included systematic reviews were of acceptable to high quality.
Only two systematic reviews for mental illness specific for older people receiving palliative care were retrieved. [2,8] Systematic reviews, guidelines and textbooks on mental illness in a general adult population in a palliative care context were included. [6,9-21] Two systematic reviews on mental illness specific for older people outside of palliative care were included. [22,23] An Australian Government guidance document published in 2018 was also included as it outlines the role of Primary Health Networks (PHNs) in providing mental health services to people living in residential aged care facilities (RACFs) as an underserviced group with particular needs. 
No guidelines for mental illness specific for older people receiving palliative care were retrieved. Many studies retrieved in the search focus on symptoms or mental health rather than clinically diagnosed mental disorders.
Other sources are included to provide context to this topic. [1,3-5,7,25-41]
Mental illnesses include disturbances of mood, emotions, thoughts, perceptions and/or behaviours that may cause problems in functioning and distress for the person and/or those around them. [1,28,36,37] Serious mental illness (SMI), and serious and persistent mental illness (SPMI) are defined in the literature as prolonged or recurrent mental illness experienced by adults. 
Mental disorders that can affect older people include anxiety disorders, mood disorders (eg. major depression, bipolar disorder), and schizophrenia, other forms of psychotic illness, substance abuse disorders and dementia. [1,3,6,7,20,27]
Whilst mental illness is more common in 16-24 year old and 25-34 year old age groups (around 25% in each), approximately 10-15% of older Australians suffer from a mental illness. [1,28] Older adults with a mental illness may have experienced a lifetime of chronic or relapsing mental illness, or have had recent onset of mental illness as the result of a significant stressor such as bereavement or diminished physical ill-health including diagnosis of a life-limiting illness.  Mental illness is often not recognised by individuals, families and health care professionals and symptoms of treatable mental illness may be wrongly attributed to ageing or to physical or environmental changes. [3,26] Hence, relatively few older people with mental illness are referred for specialised treatment. 
Older people tend to under-report or not report depressive symptoms and may not acknowledge being sad, ‘down’ or depressed. [12,26] This could be due to age, shame and lack of understanding for the disorder or the unwillingness or inability to talk about depression or admit to not coping. Fear of stigma is also a reason why people do not talk about depression.  Common depressive symptoms (such as a loss of interest in life, lack of enjoyment in normal activities, apprehension, poor sleep, persistent thoughts of death, chronic unexplained pain, poor concentration or impaired memory, lack of appetite) are often incorrectly attributed to old age, dementia or poor health.  Patients from different cultures and those whose primary language is not English also tend to under-report depression. 
For people living with dementia, the coexistence of depression may accelerate cognitive and functional decline, lead to poor medical outcomes, hasten admission to long-term care, and increase mortality.  Depression in dementia is also associated with increased burden and depression among carers of people with dementia. 
A variety of health care professionals deliver care and support to older people with mental illness, including GPs, geriatricians, neurologists, psychiatrists and other mental health professionals, and mental health teams (general adult and specialist for older people). [3,28] Timely referral to specialist mental health providers, including psychiatrists and psychogeriatrician should be considered, particularly in cases of severe mental illness, severe and persistent mental illness and dementia. [32,42]
People with a serious mental illness experience isolation, discrimination and stigma. [13,15,24,27-29] They are at a greater risk than the general population of death from unnatural causes (including homicide, suicide and accidents).  However, the difference in mortality is mostly due to death from natural causes related to chronic diseases such as cancer, heart disease, chronic obstructive pulmonary disease, and dementia. [15,16,20,27] When compared to the general population, people with serious mental illness have a lower life expectancy, and experience poorer access to health care and a poorer experience of healthcare. [15,16,27] It is suspected that this inequality persists to include the experience of end-of-life care but the evidence base is weak despite emerging research.  People who experience serious mental illness commonly have limited or no access to palliative care services [15,16,27] and undiagnosed and untreated depression can have adverse effects on the quality of life for people who do access palliative care services and their families. 
People with severe mental illness tend to avoid professional healthcare, and under-report somatic symptoms, because they may have difficulty recognising symptoms to the full extent.  These are some of the reasons for late diagnosis of disease or late referral to palliative care for people with severe mental illness. 
The evidence describing hospice and palliative care for adults with serious mental illness is an emerging area of research.  In one review, despite substantial heterogeneity as to diagnoses and causes of death, a consistent finding was that the place of death was often residential care or supported care facilities. One potential explanation for this is that for many people with serious mental illness, a residential care setting is their usual place of care, and therefore likely to be their place of death, more so than for those without a serious mental illness. 
Although there are Australian evidence-based guidelines on the assessment and management of anxiety and depression in adult cancer patients,  there are no national or international guidelines for the assessment and management of anxiety in palliative care patients.  Consultation and close collaboration and liaison with specialist mental health providers (eg. psychiatrists, psychogeriatricians) assist in tailoring interventions best suited to the person’s needs.
Depression in Palliative Care
The term ‘depressed’ is used broadly to describe both deep desperation and sad moods and this can blur the distinction between Major Depressive disorder (MDD), and periods of unhappiness and appropriate responses to loss or grief.  MDD is associated with loss of interest or pleasure in usual activities and may also be associated with a lowered or sad mood, generally present for most of the day and on most days, and accompanied by a number of additional symptoms, including several physical symptoms. Clinical depression is present when this combination of symptoms persists for at least 2 weeks.  Depressive disorders are not a normal part of dying. 
Some of the physical signs and symptoms of MDD such as anorexia, weight loss, fatigue, and insomnia are also commonly seen in the advanced stages of disease. [9,26] Symptoms of depression may arise from adverse drug effects, central nervous system disease, metabolic complications, or endocrine central nervous system effects (eg. hypothyroidism). 
Unrecognised and untreated depression in adults and older adults is linked to disability, reduced quality of life, decreased adherence to treatments, increased hospital admissions, thoughts of suicide, and lower life expectancy. [5,9,12]
For people living with a life-limiting illness and major depression, the profound sadness or pervasive guilt can interfere with the integration of information, reduce tolerance for the symptoms or the decline of serious disease. It can also contribute to social withdrawal and disengagement from things previously enjoyed, thereby creating negative perceptions with respect to quality of life. 
The prevalence of major depression among adults with advanced cancer and in oncology varies [4,17] with estimates ranging from between 8%-24% [4,12] and as high as 38-58%. [4,9,17] It has been recognised that individuals and their carers accessing palliative care services can have undiagnosed psychiatric symptoms and psychiatric conditions. [4,9] Limited data are available about depressive disorders in older people receiving palliative care. 
Depression and Dementia
A meta-analysis by Asmer et al.  included 55 studies (one from Australia) of major depressive disorder (MDD) in older adults with dementia. Conducted in inpatient and/or outpatient services, community settings, and residential aged care, these studies included more than 13,000 participants. Despite the wide-ranging estimates of prevalence, the review found that MDD is common among older adults with dementia with an average prevalence of 15.9%. The estimated prevalence of MDD according to dementia severity was higher (but not statistically significant) among those with milder dementia than moderate dementia. It is likely that depression assessment is more accurate among people with mild dementia where awareness of symptoms is preserved to a greater extent than among those with more advanced dementia. The prevalence of depression in older adults with vascular dementia (24.7%) was significantly higher than in those with Alzheimer’s disease (14.8%). As cerebrovascular disease is known to be an independent risk factor for depression among individuals without dementia, the higher rate of depression in people with vascular dementia is consistent with the increased risk.
People living with dementia are twice as likely as their peers to be diagnosed with depression; and conversely, the presence of chronic depression increases the risk of dementia later in life.  This review  also discusses the interrelationship between depression, depressive symptoms, cognitive impairment and dementia. This interrelationship means that separating depression and cognitive impairment including dementia can be challenging. People with major depression can display clinically significant cognitive deficits, particularly in measures of executive functioning and attention, both during depressive episodes and in the periods of normal or stable moods. Chronic depression has been identified as a risk factor for the development of dementia and may contribute to the high prevalence of depression in dementia. People living with dementia also frequently experience stressful life events and limited social supports that further contribute to the increased risk of depression.
Tools for Assessing Depression
When screening for depression in terminally ill patients, clinicians may need to differentiate depression from other comorbid medical conditions which may mimic the symptoms of MDD, including hypoactive delirium, hypercalcemia, hypothyroidism, and brain metastases.  Cognitive impairment or dementia, and changes in mood as side effects of medical treatments and adverse drug reactions, may present complications in the assessment of depression. [11,25]
Another challenge in palliative medicine is distinguishing “normal” distress due to the condition or decline from abnormal distress. [11,25] The experience of distressing or uncontrolled physical symptoms such as nausea, pain and dyspnoea, may contribute to the development of depression. Consequently, control of these physical symptoms may help to relieve depression. [10,17,25]
Physical symptoms found in depression, such as lack of appetite and poor sleep, may also be due to illness burden or disease-related treatments. [25,26] This can confound the diagnosis. [5,25]
The stigma attached to mental illness may be a barrier to diagnosis as the person may withhold information about the symptoms they are experiencing.  The European Clinical Guidelines for the Management of Depression in Palliative Care stress the importance of assessing depression-related variables such as use of antidepressants, psychiatric history, and duration of the depressive episode when diagnosing depression in adults receiving palliative care. 
In palliative medicine, the clinical interview is the main diagnostic tool for depression.  One of several screening tools may be used. Depression is commonly diagnosed using the Diagnostic and Statistical Manual of Mental Disorders (DSM) or International Classification of Diseases (ICD). [4,8] Common symptoms of advanced cancer disease, such as fatigue, lack of appetite, and sleep problems, are also used as diagnostic criteria for depression (eg. DSM-V and ICD). Depending on which symptoms are included in the different depression assessment methods, the extent of the cancer disease may lead to false-positive depression cases and consequently threaten the validity of the depression assessment and influence prevalence rate estimates. 
The Geriatric Depression Scale (GDS) is a commonly used instrument for screening depression.  The GDS was specifically designed for use with older people, uses simple and consistent response alternatives, and focuses on non-somatic symptoms in order to minimise overdiagnosis in medically ill populations.  It has been shown to have excellent sensitivity and specificity in the aged community with many characteristics that are desirable in palliative care.  A recent systematic review examined the use of the Two-Question Screen for older adults and found this to be comparable with other tools, including the GDS [4,23] As this tool is simple, reliable and convenient, it has been recommended for screening for depression in older people and this is extended to the palliative care context. 
The Edinburgh Depression Scale (EDS) and Brief Edinburgh Depression Scale (BEDS) have also been shown to be suited to palliative care patients. [4,12,14] The absence of somatic items is considered an advantage yet the inclusion of only two of the seven most common depression symptoms in geriatric patients is considered a limitation. 
The Beck Depression Inventory (BDI), the General Health Questionnaire-28 (GHQ-28), and Center for Epidemiological Studies - Depression Scale (CES-D) have been shown to be reliable and valid tools. [9,11] The potential usefulness for screening older people using the BDI may be diminished somewhat by its comparatively long recall period (two weeks).  The shorter, 12-item version of the GHQ, the GHQ-12, has not been reviewed sufficiently to understand its use in palliative care patient or for older people. 
The Patient Health Questionnaire-9 (PHQ-9) is a brief tool, freely available, widely used, and shown to be highly reliable and can be used in primary care. [9,14] The Distress Thermometer is a single unitary measure is rapid and straightforward to use but has been shown to have comparatively lower reliability.  The Hospital Anxiety and Depression Scale (HADS), a commonly used and validated screening tool for anxiety [4,10,34] has separate scales for depression and anxiety and is a useful tool for an initial assessment. The evidence suggests that it is suitable tool for advanced cancer patients and for those receiving palliative care as it excludes somatic symptoms. [11,12] The usefulness of these tools (PHQ-9, Distress Thermometer, HADS) to screen for depression in older people receiving palliative care is not clear.
Assessment of depression should be accompanied by an assessment of anxiety, as these symptoms are strongly associated. 
Treatment of Depression in Palliative Care
Treatment of depression can significantly improve quality of life and is as effective in palliative care as in other situations.  Treatment for depression includes supportive counselling, Cognitive Behavioural Therapy (CBT), problem-solving therapy, group therapy, guided imagery and mindfulness-based therapy. [4,9,11] However, there is a paucity of research and high-quality evidence on psychological therapy in palliative populations. [4,9,11]
The approach to treatment of depression depends on the severity of symptoms and the estimated course of the life-limiting illness. [4,5] Antidepressants can be as important in palliative care as they are outside palliative care. There is no evidence of superior efficacy for any one antidepressant in palliative care. [4,11,14] The delay in the effect of an antidepressant may complicate prescription for a person towards the end of their life. [4,5] Information on pharmacological treatment of depression (not specifically older adults) can be found in the Therapeutic Guidelines (subscription required), the Oxford Textbook of Palliative Medicine (5 ed.) (subscription required), Oxford Handbook of Palliative Care (3rd ed.) (subscription required), and the Scottish Palliative Care Guidelines - Depression. [9,14,31,32,42]
People in the final months of life often have irregular organ function and multiple medications, so care needs to be taken with psychopharmacological treatments. Antidepressants should be chosen based on several factors such as overall health, cognitive abilities, comorbidity, previous response to antidepressants [11,22] and life-expectancy. 
For people with clinically significant depressive symptoms and cognitive impairment, actively treating depression and other comorbidities that may contribute to cognitive impairment is recommended prior to an assessment of dementia. [8,24]
Anxiety in Palliative Care
Anxiety as a symptom is common in the context of palliative care and it can also be a presenting feature of a wide range of medical conditions and mental health disorders that are common in the elderly including specific anxiety disorders (eg. generalised anxiety, agoraphobia, panic disorder) depression, dementia and delirium. Hence thorough assessment of anxiety is essential in determining appropriate intervention and management strategies.  Anxiety disorders have very specific diagnostic criteria. [10,42]
Anxiety disorders – defined by excess worry, hyperarousal, and fear that is counterproductive and debilitating – are some of the most common psychiatric conditions in the developed countries.  Research indicates that between 10% and 30% of cancer patients have an identifiable anxiety disorder. 
Generalised anxiety disorder (GAD) is the most common anxiety disorder in old age, with the prevalence ranging from 1.3 to 4.7%.  Anxiety rates are higher in older people than the general adult population.  The prevalence rate for anxiety disorders for residents is estimated to be between 3.2 and 20%  and this increases to three quarters of older people with cognitive dysfunction.  Up to 75% of carers of older people with cognitive impairment are also affected by anxiety. 
Anxiety is complex and deciding at which point anxiety becomes abnormal and pathological is difficult. [5,10,21] It can be a response to impending death but may result from other untreated conditions or symptoms [10,21] or a reaction to certain medications or abrupt withdrawal of certain medications.  Anxiety can be a component of delirium or depression, as well as a pathological feature of cancer or its treatment. [5,10]
Anxiety is characterised by feelings of apprehension, fear and dread. It may be expressed in physical symptoms, such as palpitations, nausea, dizziness, shortness of breath, tremors, sweating and diarrhoea.  The diagnosis of anxiety relies on both verbal and non-verbal cues, and the importance of non-verbal cues may explain the observation that physicians miss the diagnosis in as many as one-third of patients. 
Sensory deficits, medical comorbidities, and cognitive impairment, which are common in residents, can affect the presentation of anxiety, and it is difficult to distinguish between medical and psychological causes.  For instance, behaviours such as pacing, restlessness, and avoidance, may potentially indicate anxiety or agitation related to dementia.  Similarly, physiological signs of anxiety in residents (e.g. shortness of breath, palpitations) are also common symptoms of many physical health conditions (eg. cardiovascular disease, hyperthyroidism) that increase with advancing age or can be a side effect of medications prescribed to older adults. 
Tools for Assessing Anxiety
The diagnosis of anxiety disorder can be missed if assessment focuses on somatic symptoms without due attention to the person’s emotional state.  To accurately establish a diagnosis of either anxiety, adjustment disorder, or depression in adults who are suffering with uncontrolled pain or other physical symptoms, those symptoms and the related distress should be promptly relieved if possible, before a psychiatric assessment is conducted. [10,21]
The Hospital Anxiety and Depression Scale (HADS), a commonly used and validated screening tool for anxiety [10,34] has separate scales for depression and anxiety and is a useful tool for an initial assessment. The Edmonton Symptom Assessment Scale is also commonly used and validated. 
The Rating Anxiety in Dementia scale (RAID) has been used and validated with dementia patients in different settings and is commonly used as an anxiety measure used in residential aged care facilities.  Findings in a systematic review suggests the RAID measures symptoms of anxiety that are separate to those that often overlap with depression.  The Geriatric Anxiety Inventory (GAI) has been validated for use in older people in residential facilities. 
Failure to diagnose anxiety increases the likelihood of anxiety-related problems. These can include difficulty making decisions about treatment or adhering to treatment, and more medical consultations or presentations to hospital emergency services for symptoms such as dizziness, palpitations, breathlessness, insomnia, or pain. 
Pre-existing and co-existing psychiatric illnesses must be assessed because many, including depression, demoralisation, personality disorder and delirium, are associated with anxiety. 
Treatment for Anxiety
Anxiety as a symptom can be managed via brief interventions while anxiety disorders require treatment with more lasting effects.  Treatment for anxiety is both psychological and pharmacological. [5,10]
The pharmacological agents for the treatment of anxiety in patients at the end of life have not been assessed in randomised controlled trials as to their effectiveness in adults and older adults receiving palliative care. [19,21] Information on pharmacological treatment of anxiety can be found in the Therapeutic Guidelines (subscription required), the Oxford Textbook of Palliative Medicine (5 ed.) (subscription required) and the Oxford Handbook of Palliative Medicine (3 ed.). [10,31,32,42]
Non-pharmacological management includes a broad range cognitive techniques and psychotherapy. [10,42] Complementary Therapies (eg. massage, music, art, journal) may be helpful. [10,42]
People with schizophrenia are at risk of receiving poorer end-of-life care than other patients. [13,16] They are often undertreated, avoid treatment and are about half as likely to access palliative care. [13,16]
Due to the chronic and often lifelong nature of schizophrenia, there are many people who have schizophrenia into older age and have symptoms as they approach death.  Schizophrenia is associated with considerable disability and may affect education and work performance.  People with schizophrenia are often marginalised and in need of assisted living, supported housing and supported employment but due to their disability they have difficulties accessing treatment, education, housing, and employment. [13,29,39]
There has been very little research on palliative care and schizophrenia and the evidence base is low. However, in a recent scoping review of 32 studies it was noted that due to the chronic and lifelong nature of the condition it is likely that people with schizophrenia will approach older age and death with symptoms.  Schizophrenia is one of a number of mental illnesses listed as by the Royal Australian and New Zealand College of Psychiatrists as potentially developing in later life. 
It has been reported that people with schizophrenia are less likely to be referred to palliative care when they are dying. This is likely in part due to the high prevalence of homelessness, incarceration, health-care provider bias, stigmatisation, and under treatment of physical illness among people with schizophrenia.  Yet it has been reported that familiarity with health professionals encourages end-of-life discussions and minimises the trauma associated with hospital admission. Although more research is required in this area there is good support for psychosocial interventions including music therapy and spirituality-related approaches.  Pharmacological management is also supported with guidance from mental health specialists and with close medication monitoring for responsiveness and side effects. 
A high pain tolerance or reduced response to pain may mean that people with schizophrenia and a terminal illness are unaware of symptoms until very late in the clinical course.
Suicidal Thoughts and Behaviours
Most older people who die by suicide have a diagnosable mental disorder at the time of death, most commonly severe depression. [1,9] In Australia in 2018, mood disorders, including depression, were the conditions most related to suicidal deaths and associated with 39.5 % of suicide deaths of 65-84 year-olds and 23.1% of suicidal deaths of 85+ year-olds.  For adults aged 65 years and above, the other common factors associated with suicide were emotional states (including suicide ideation), anxiety and stress-related disorders.  Chronic diseases and complex health conditions were likely to be identified in older age suicides with cancer associated with 13.4% of suicide deaths among those aged 65 to 84, and 11.5% among those aged 85 and over. . Suicidal thoughts and the circumstances leading up to suicidal behaviour in older people in palliative care frequently involve depression and associated feelings of low self-worth and hopelessness, pain, and poor symptom control, excessive concern about being a burden to others and lack of social support, and fears of abandonment by others. In a general sense, declining health, chronic pain, impairment in daily living activities, threats to physical and financial autonomy, social isolation, lack of social support, grief, depression and hopelessness also contribute to suicidality. [1,9]
Suicidality can develop from the loss of the meaning and value of life, the loss of purpose, also severe demoralisation or depression, pain and poor symptom control. [9,33] Risk factors include debility, social isolation, delirium, alcohol or other substance abuse, and history of psychiatric disorder. [9,33] Whenever a person expresses a desire to die, clinicians need to evaluate whether this is a readiness to accept death when it arrives or active suicidal thinking. Evaluation for the presence of depression or demoralisation is vital, assessing for meaninglessness, pointlessness, hopeless-helpless thinking, or worthlessness as pathways to suicidal thinking. 
Any patient expressing suicidal ideation (the indication that a person is likely, or is planning, to commit suicide) needs psychiatric evaluation or consultation. [13,31,42]
Treatment for suicidality includes active treatment of depression, hopelessness, and demoralization. With the warning signs of an imminently impending suicide attempt (agitation and increasing anxiety, desperation, and easy access to a mode of dying), admission to hospital, one-to-one observation, careful risk assessment and removal from the possibility of self-harm are necessary. 
- There is very little evidence which specifically addresses the prevalence of mental illness, the needs of and treatment of older people with a mental illness (anxiety, depression, schizophrenia and suicide ideation or suicidality) with palliative care needs or receiving palliative care.
- More robust evidence is needed about the suitability, validity of screening tools for mental illness for older people with palliative care needs or receiving palliative care.
- There is very little evidence on the treatment for older people with a mental illness at or approaching the end of their life.
- Many of the studies reviewed investigated the symptoms of depression or anxiety. At times the distinction between symptom and illness or disorder was not clear.
Page created 13 March 2020